What it’s like to have narcolepsy

Most of the time, it’s nothing. Most people certainly can’t tell I have it, unless I’ve told them what to look for. It’s not like the movies, I don’t just pass out cold into my dinner plate.

You know that terrible blonde joke, where the girl won’t take off her headphones? And finally someone grabs them off her head, and a few minutes later she falls over dead? Because the headphones were telling her to breathe. This is what it’s like for me when I’m tired: I have to actively tell myself to stay awake, constantly, every moment. Often that is not enough. It creeps up on me, until suddenly staying awake is physically exhausting, like when your muscles are vibrating at the end of a hard work out, and all of your focus is required to make any little movement.

In fact, this is what got me thinking on this topic. The last few weeks at the gym have been really challenging for me, because I’m getting incredibly sleepy mid-workout. Like, in the middle of a set of lunges, I have to stop and yawn repeatedly, so deeply that I can’t multitask. I have to rest between circuits because I need all my energy and focus to will my eyes open.

That’s during actual physical activity, which is the easiest time to stay awake for me. It’s much harder with passive or sedentary activities, like meetings, or in the car, or watching TV. I’ve dozed off in meetings, classes, during one on one conversations. Once I fell asleep at a punk rock concert. It’s so absurd it’s funny. It has to be, to offset the times when it’s not.

I remember in grad school, in one of our typically tiny classes where all five of us necessarily sat in the front row, I’d try all kinds of things to stay awake. Knitting, taking notes like my life depended on it. One day, desperate, I decided there was no way I could doze off if I were drinking water. So I’d take a sip and hold it in my mouth for a bit, then swallow, do it again. I fell asleep, and choked spectacularly, spit water everywhere. It was incredibly embarrassing. There were other instances in grad school, where my sleepiness became a legitimate hindrance – I don’t know if I’ll ever forget my advisor calling me into his office, and telling me I’d have a hard time in life if I couldn’t manage to stay awake during meetings. Then there are the times it’s scary – I have felt my eyes close for far too long while driving, I’ve gotten the nods and hit the rumble strips on the sides of the highway. I’ve gotten home and realized I don’t remember any of the trip.

I figured I just needed to try harder, that I was just being rude or careless, needed to listen harder or more actively, attend to whatever task was at hand. It wasn’t until my parents were in a car accident, because my dad dozed off at the wheel, that I decided it might be more than that.

So I had a sleep study done, at the recommendation of my GP. The study was kind of terrible – they plaster all these sensors onto your head, and there are wires everywhere, and then they expect you to sleep normally in a strange place. I figured afterwards that the results would be screwed up, because I’d slept so terribly, tossing and turning and asks asking ages to all asleep, when under normal circumstances, I’d pass out the moment I laid down. But no: the results were clear – narcolepsy. I’d fallen asleep in under two minutes, regardless of what it seemed like. My sleep cycles were out of whack, as they are in narcolepsy – I fell into REM sleep almost immediately, whereas that takes an hour or more in normal folks.

It turns out that a lot of my little quirks are actually classic symptoms of narcolepsy – a lot of the little things Kevin and I have always joked about. How I get really weak when I’m tired, can’t make a fist, can’t pick up the baby, can’t wrestle off a tickle fight. Turns out that’s cataplexy – loss of muscle tone, thought to be a symptom of REM sleep popping up at the wrong time. How I will sort of doze off taking notes or knitting, and keep on moving my hands in a silly little mimic of whatever they were up to before I nodded off – that’s automatic behaviors, again, a symptom, like how a dog will run in its sleep. I also will start dreaming before I’m asleep, start spouting off complete nonsense when I’m tired – hypnagogic hallucinations, REM sleep asserting itself at the wrong time. Kevin always tries to keep me talking when I do that, and eventually I always realize what’s going on and feel incredibly confused. All these little things were my funny quirks, they are why he and many others call me Snoozie. But they’re actually diagnostic criteria. Oops.

So, narcolepsy. Mostly funny, except for the part where it affects my job (rarely) or keeps me from driving very far (actually annoying). I have medicine I can and do take when I really need to – when I need to drive more than 20 minutes, or if I really need to have my shit together at work. But I don’t like to take it often, it’s a stimulant that really just masks the underlying problem. The most effective treatment for narcolepsy is frequent naps, ever couple hours, every day. So, basically, I’d need to be a trophy wife with no responsibilities. Instead, I’ll just keep being snoozie.

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13 Responses to What it’s like to have narcolepsy

  1. Jesabes says:

    I had no idea your narcolepsy was a more recent diagnosis. I thought you knew growing up. It must have been incredibly hard going through school not realizing you fell asleep often for a reason. Did you Dad get diagnosed, too?

    • snoozical says:

      Yeah I didn’t get it diagnosed until three ish years ago – though in retrospect, the symptoms had been there all along. My dad ended up having sleep apnea, causing excessive fatigue – the sleep he was getting just wasn’t restful because of the apnea. He’s got that mostly under control now, has one of those sleep snorkel things (CPAP).

  2. Doing My Best says:

    That’s sad that people just thought you were spacey for all that time =(.

  3. HereWeGoAJen says:

    Matt had a sleep study a few weeks ago and said it was horrible.

    This sounds like a very uncomfortable thing to have. I hope it is a little easier to manage now that you’ve gotten it diagnosed and know what you are dealing with now.

  4. Charleen says:

    Wow, that must have been so frustrating. I mean, I’m sure it’s still frustrating, but at least now you know what the issue really is, and that it’s not just you.

  5. Becky says:

    The person I know who has narcolepsy is a teacher, and he gets an extra short break during the day so that he gets to nap at least once a day while at work. I think he actually gets two short naps, but I’m not certain.

    • snoozical says:

      I am technically allowed to nap at work, head on desk or whatever, but personally I feel like it would make me look bad. Not everyone knows my background, and the thought of explaining to coworkers makes me want to jump out a window.

  6. Elsha says:

    This is fascinating. I can’t imagine living with narcolepsy. Of course, I have insomnia, so flip side of the coin there.

    • snoozical says:

      Elsha – just THINKING about insomnia makes me anxious. And it can cause excessive daytime fatigue too! I’d share my narcolepsy if I could.

  7. Erica says:

    One of my best friends was diagnosed with narcolepsy a few years ago after he got fired (from a temp job) for falling asleep during a meeting. It seems very difficult. I’m not a full-on insomniac, but I’m definitely over on the can’t-nap, can’t-sleep side of the spectrum.

  8. Pingback: Going Down Swinging/Whining » snoozical

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